On April 2, PCRF hosted its 7th annual Golf for the Cure for Parkinson’s at Lake Ashton Club in Winter Haven, Florida. Despite thunder storms with heavy rain, the event was a bright spot for us during Parkinson’s Awareness month.
As always, the Lake Ashton community came together to support us and others on this Parkinson’s journey. TeamFox friends from around the state joined us and Sam Fox from the Foundation for our event.
This year was the first year I have fully allowed the entire Harmon family an equal say in event details and planning. Those who know the Harmon ladies won’t be surprised, when I say “I could not have done it without them.” In fact, I should have done it long ago.
This year we had a Marquis Partner, Family Elder Law from neighboring Lake Wales. In addition to expense and volunteer support, they agreed to match 10% of monies we raised for the Michael J Fox Foundation.
Due to the support and hard work of everyone, I am proud to announce that we raised over $48,000 – 100% of these monies will go directly to research by the Fox Foundation.
In a little over a month, I will celebrate the tenth anniversary of my diagnosis of Parkinson’s. Ten years ago, I was working and Cecily was not, and both of our girls were still in college. I was healthy or at least I thought I was, and I was fully engaged in the pursuit of the American dream. Then the doctor’s visit where I heard “You have Parkinson’s disease “which shifted my reality. With Cecily’s help, I was able to adjust to this new chapter of my life.
Parkinson’s has given me an endless task of pills and physical challenges. I am not complaining. I am fortunate that the disease is progressing slowly, but we can’t stop the march of time.
Parkinson’s has also given us a new community that participates in our journey. This community consists of a number of entities. First and foremost of which is a stronger family unit. The Harmon “Wonder Women” have shared the good, bad and the ugly. They are the foundation of our journey with PD.
Second is our friends, new or old. Without them, we are an empty shell. Thirdly is our TeamFox family. They make me laugh and they make me cry with their extraordinary feats and accomplishments. When we meet old Foxes or new ones, there is an instant bonding and understanding. The PD Warriors, whether part of TeamFox or not, make up a strong brotherhood of support and love that makes this journey much easier. Their focus is not on how many times they fall, but how many times they get back up.
So, my time with Parkinson’s has passed quickly. We have not found the cure, yet. We are moving forward. A number of promising research projects are in trials that may relieve symptoms and be almost as good as a cure. But that is not enough. We have lost too many of our fellow warriors, with the passage of time.
Recently, our family joined TeamFox in a 10K at the Disney Marathon weekend. When I crossed the finish line, I reflected on friends who have passed away with PD this year. I realized we are not doing enough. TIME IS OUR ENEMY!
THE TIME IS NOW TO RE-DEDICATE MYSELF TO FINDING A CURE. PLEASE JOIN ME. LET’S END THIS DISEASE.
The world is so uncertain. We live every day, usually hoping for things to come or not come. We often spend our time worrying about things we cannot control. At worst, Parkinson’s can be a dark stranger taking little things away from us every day, or at best, a pain in the ass which we have to cope with. A disease that is incurable leaves few options of what you can do. Our family has chosen to try and do all we can do.
We know that through exercise, I can lessen my symptoms, and research tells us that it can also slow the progression of the disease. So, this weekend I had the privilege to work the LSVT (Lee Silverman Voice Training). BIG people in a certification training session for Physical Therapists and Occupation Therapists.
This program is specifically designed to address movement symptoms of PD. There we 80 participants who were learning about this method, hoping to become certified. I was asked to be a patient in a typical therapy session, so the trainees could observe a session with a live patient. A gross understatement would be that I had fun. Imagine me having a captive audience to show off to, while being fully “on meds.”
By the end of 30 minutes I was in a full sweat and ready to go home. The trainer had taken me out of my comfort zone as he coached me to perform “bigger.” Cecily and I left and went home to relax and prepare for the next day.
The second day was an open presentation of the LSTV product to the local PD community. I had distributed the flyer to members of our support group and five of us were there. The program notice included a presentation on the program followed by a session where the newly trained therapists could work with actual patients, which I thought was a great idea. I was pleasantly surprised when all our group volunteered to be training patients. Expecting to be able to closely watch how our group did, I found my trainers (8 of them) enthusiastic about having a shot at Bob. As each one had their chance to show me an exercise, their enthusiasm drove me to a “bring it “attitude, which led to a very high-level session. All the time all of my trainers focused on my performance and condition in a controlled environment. We even worked on my golf swing. After a few practices I thought I was Freddy Couples (on crack). Only after seeing the video did I realize that the visuals did not match my mind’s eye. (I had two spotters.)
At the end of the one-hour session, we duplicated performance tests and I found that I had achieved a 50% improvement in flexibility and speed. Only then did I have an opportunity to observe other members of our group. Regardless of symptoms, every test subject was showing significantly improved movement. It was truly a moving and exciting moment for all of us, including the trainers.
Patients came away with an enormous sense of empowerment. There was something we could do. It would not be easy, but we had choices. It was a BIG moment.
So regardless of what you choose to help you push back the daily mudslide of Parkinson’s, you have choices. Choose now, be a warrior.
Last week Cecily and I went on vacation for 10 days with close friends in Coeur d’Alene, Idaho. The first few days were spent in Walla Walla wine country, which was territory we were very comfortable with. I have been collecting wine for twenty five years and despite a loss of smell thanks to Parkinson’s, I was at ease with wine tasting. Upon our return, we spent a day on the lake. Again another comfort zone. Grew up around boats.
The next day we were planning an ATV trip up one of the many trails nearby. After a comprehensive lesson on how to drive, turn, and most important how to stop the devil’s spawn, I was deemed thoroughly competent to operate the four wheeler. What was still an unknown for me is whether I was physically ready for this adventure, a fear I quietly kept to myself, under withering questioning by my back seater.
The next morning bright and early, we loaded up the ATVs and went to the starting part of this journey. At the end of road to nowhere, we jumped on our trusty metal stallion. After the first few seconds, before the stream crossing, it was apparent to me that my small muscle control was somewhat lacking. I knew this by the Holy s%%^ from Cecily as we jumped and lurched forward. Since neither of us had ever been on an ATV, I was able to convince Cecily that everything was fine (discussed life insurance policies).
To set the stage for those who have neither experienced this type of excursion, the trail was 8 feet wide (or less), the vehicle as 4 feet wide, periodic washouts were common, flat (side to side) was non-existent, direction was definitely up, and the drop-off on downhill side of the trail was anywhere from two feet to two thousand feet.
As a point of reference of what I saw on the two hour trip to the top, every time Cecily said look at that I responded in an expletive “No I’m busy, look at that rock.” Have I mentioned the cramps? Right thumb on the throttle control, right leg, left leg……… Short version my hair didn’t cramp. We were on the last big run to the top when I had to stop. Hip cramp (who’d a thunk). Rule #1 don’t stop on a steep incline. I said to Cecily, “I don’t think I can make it.” She said “What do we do?” Having no other choice, I said “We’ve Got This.” I don’t know if her hug was in loving agreement with me, or her just hanging on, I hit the throttle and within a few minutes we were at the summit. There was no gas in our tanks, although the beast was half full and wanted to continue. Dick, our fearless leader was still slowly getting off his machine, but he quickly found two beers in the cooler to celebrate.
We made it!
As we stood there, a calm sense of accomplishment came over me, for about two sips. He suggested lunch at a lake about “10 minutes downhill” and off we went. It was easy compared to “up.” All I had to do was hold the brakes fully locked. Shortly (a little more than 10 minutes) we arrived at the lake which was beautiful. We took out our lunch and the remainder of the one precious beer. That is when we heard the sound of a helicopter. Looking up we saw a water supply helicopter which was actively being used to fight the forest fires plaguing the northwest. To our surprise it was only a few minutes after it took water from the lake that it returned for its next load. CLICK. That is the sound of our collective brains. There was a fire nearby. After less than a minute, we assessed our situation and realized it was a small hot spot with five (number of trucks parked at the lake) firefighters trying to contain the fire’s spread with the support of the helicopter. No big discussion here. We jumped on the devil’s spawn and hightailed it down the mountain gravel road to the ever present sound of the helicopter and chain saws.
I lead the way as fast as I could.
So why this post? I have reflected on a great adventure. All of the details fade behind that one moment before the summit when “I was done.” I could have easily gotten off the ATV and quit, but I didn’t.
When I thought of our journey with Parkinson’s, I remembered all the times I wanted to give up, and it wasn’t an option in my mind. I remembered Matt Mitchell telling me “You are not alone,” and John Ryan and many others (including all of my family) screaming to others, meeting their challenges “YOU’VE GOT THIS”. The truth is we did have it. We knew we could persevere, just like we do every day.
“Time waits for no man,” “Time marches on,” “Live for Today” are sayings that we hear from time to time. For those who know me, I don’t worry about the future very much, or so I say. The truth is I am constantly reminded that life and time are precious. But I refuse to spend time worrying about tomorrow to the extent I lose what I do have, today.
Many years ago I was talked into forming a Parkinson’s support group. I was afraid to do that because I didn’t want to “See the Future” as I met patients who were farther along the Parkinson’s journey than I was. But I was surprised by what I got in return for reaching out to those in need.
It was much more than I ever expected, a sense of community that comes immediately upon meeting a fellow journeyer. I found as we talked about symptoms and challenges, there was mutual understanding and a calming sense that “We were not alone.” I learned very quickly that time was not the sole factor defining the daily small losses of physical abilities. So, my approach was to take the best of each day and build on it and to cram as much into each day as I could.
I spend a lot of time raising money to find the cure. As soon as one event is finished, we start the next. We will find the cure, I have no doubt, but “Time marches on.”
This last month has challenged my beliefs and optimism. During the last 30 days, four members of our support group have passed away, in addition to the father of some people we just met at the Florida Summit of the Tour de Fox. This loss is disheartening, and freaky. Continue reading Grief a motivation to stay the course for a cure→
I curled up to watch the season premiere of Royal Pains the other night and the signs popped out at me.
Handwritting that gets smaller and smaller? That’s impossible, the character said. No. No, it’s not. Getting clumsier? Tremors? What does it mean? All of my Parkinson’s sensors went off.
And when the doctor, Hank, told the 20-something Aubrey — a reality TV star — that it seems likely that she’s in the early stages of Parkinson’s disease. Enter the sad, depressing music and a cut to commercial.
I was lying on my couch watching this, and as the commercial started, I actually sat up — feeling like the wind had been knocked out of me. And yet, while an understandable reaction, I felt mad at myself for feeling that way. It’s been nine years since that moment Dad sat me down on the back patio to tell me the news. It’s been nine years since I heard the word “Parkinson’s” and then couldn’t hear the rest. Or see through the tears. And it’s been a great nine years since thanks to my dad’s attitude and the family and cause we’ve found in the Michael J. Fox Foundation and Team Fox. Continue reading Parkinson’s makes a splash on USA’s Royal Pains→
The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.
Here’s an excerpt:
A San Francisco cable car holds 60 people. This blog was viewed about 1,100 times in 2014. If it were a cable car, it would take about 18 trips to carry that many people.
Lately I’ve felt like I haven’t really been contributing much to the cause. I find myself in more of a background role, itching to get started again on a new Parkinson’s project.
Emily and I went up to Morristown, N.J., recently for a friend’s fundraiser, and I was telling Stephanie, from the Michael J. Fox Foundation how I was feeling. She reminded me that in supporting those people and getting others involved in the cause, I’m still doing something amazing.
The next week, I really got to see this in action at the Philadelphia Marathon. And I’m so grateful.
A little while ago, The Michael J. Fox Foundation asked me to interview my Mom for a newsletter about the PPMI study that she’s involved in.
They wanted the personal touch of a mother and daughter talking about why my mother is so awesome and involved. (OK, so maybe the author is biased. Just a tad.)
In the end, I wrote a novel, so only a small part appeared in the newsletter. See the whole piece below.
Look at this crowd of people at the Philly #partnersinparkinsonsTaking a selfie with the panel for Building connections with family, friends and community!
Recently, I had the absolute honor to be a panelist at the Partner’s in Parkinson’s event in Philadelphia.
What’s Partners in Parkinson’s? It’s a newish initiave from the Michael J. Fox Foundation and Abbvie to help Parkinson’s patients get the full benefit of a team when it comes to their journey. What’s that mean? Well, you can attend events to learn more about how you can help and about PD in general. Or you could find a new specialist. Or you could get one-on-one support from an advocate.
It’s a really cool tool that I’ve personally be able to use to get someone help finding a doctor in New York from right here in York, Pa.
The Foundation asked me to come out to Philly to be the “adult child” of a person with Parkinson’s on a panel called “Building Connections with Family, Friends and Community.” The goal? To share my story and help these people find ways to get involved or get more information. Most of the people in attendance were either recently diagnosed or have recently decided to get involved.
We had a conference call to prep for the panel, but in the end, we were told to be ourselves (they know better!) and share our stories. Simple enough, right? Well, I got a little nervous on the way.
On April 2, PCRF hosted its 7th annual Golf for the Cure for Parkinson’s at Lake Ashton Club in Winter Haven, Florida. Despite thunder storms with heavy rain, the event was a bright spot for us during Parkinson’s Awareness month.
In a little over a month, I will celebrate the tenth anniversary of my diagnosis of Parkinson’s. Ten years ago, I was working and Cecily was not, and both of our girls were still in college. I was healthy or at least I thought I was, and I was fully engaged in the pursuit of the American dream. Then the doctor’s visit where I heard “You have Parkinson’s disease “which shifted my reality. With Cecily’s help, I was able to adjust to this new chapter of my life.
Parkinson's Cure Research Funding, Inc 